The purpose of this study was to identify and describe the experiences of quality of life/life situation among those who were next of kin to persons with inoperable lung cancer. Data were collected in qualitative interviews, where 11 next of kin articulated their lived experiences, and were interpreted through interpretive phenomenology. Four themes were identified: changed life situation, experiences of uncertainty due to awareness of the ill person’s changed health status, interpersonal relationships, and false hopes due to health care professionals’ treatment. These four themes gave a structure presenting the essence: balancing a changed life situation. The findings of the study point out the importance of promoting support for the next of kin, because they are significantly affected by the changed life situation. There is a need to identify their needs and to support them.
WHO. In: Stewart BW, Kleihues P, eds. World Cancer Report. Lyon, France: IARC Press; 2003:182-187.
2.
The National Board of Health and Welfare (Socialstyrelsen).Cancer Incidence in Sweden2007. Health and Diseases. Official Statistics of Sweden. Stockholm, Sweden: Centre for Epidemiology; 2007. http://www.socialstyrelsen.se/NR/rdonlyres/64AD2A81-FF9F-459F-B0CF-CA955B7E8513/13410/200812516_rev2.pdf . Accessed March, 2009.
3.
Cancerfonden. Cancer I Siffror2005. Populärvetenskapliga Fakta Om Cancer - Dess Förekomst, Bot Och Dödlighet [Cancer in Figures 2005 Popular Facts About Cancer] . Stockholm , Sweden: Socialstyrelsen ; 2005.
Lewensohn R., Sörensson S.Lungcancer onkologi [Lung Cancer Oncology]. Stockholm , Sweden: Liber; 1998.
6.
De Petris L. , Crino L., Scagliotti GV, et al. Treatment of advanced non-small cell lung cancer. Ann Oncol. 2006;17(2):36-41.
7.
Koyi H., Hillerdal G., Brandén E.A prospective study of a total material of lung cancer from a county in Sweden 1997-1999: gender, symptoms, type, stage and smoking habits. Lung Cancer. 2002;36(1):9-14.
8.
Colley MESymptoms in adults with lung cancer: a systematic research review . J Pain Symptom Manage. 2000;19(2):137-153.
9.
Doyle, D.Oxford Textbook of Palliative Medicine. New York, NY: Oxford University Press; 2004 .
10.
Matzo LPM , Sherman DWPalliative Care Nursing-Quality Care to the End of Life. 2nd ed. New York, NY: Springer Publishing Company; 2006.
11.
SOU.Döden angår oss alla - värdig vård vid livets slut. Delbetänkande från kommittén om vård vid livets slut [Death is concerning us all-dignified care at end of life]. Stockholm, Sweden: Socialdepartementet; 2000:6. http://www.regeringen.se/content/1/c4/28/67/9cd6bc6a.pdf. Accessed March, 2009.
12.
Socialstyrelsen.Begrepp och termer inom vård och omsorg [Concepts and terms used in health and care]. Rapport från Info VU-projektets kunskapsnätverk för begrepp och termer. Stockholm, Sweden: Socialstyrelsen, Sveriges kommuner och Landsting; 2005. http://www.socialstyrelsen.se/NR/rdonlyres/465DC500-CB71-40A6-8FDA-E38763DB635308/4539/200513121.pdf. Accessed March 2009.
13.
Given B., Given C., Kozachik S.Family support in advanced cancer. CA Cancer J Clinic . 2001;51(4):213-231.
14.
Andershed B. , Ternestedt B-M.Being a close relative of a dying person: development of the concepts ‘‘involvement in the light and in the dark.’’ Cancer Nurs. 2000;23(2):151-159.
15.
Brobäck G., Berterö C.How next of kin experience palliative care of relatives at home. Eur J Cancer Care. 2003 ;12(4): 339-346.
16.
Kirk P., Kirk I., Kristjanson LJWhat do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ. 2004; 328(5):1-7.
17.
Friedrichsen M., Strang PM, Carlsson MEReceiving bad news: experiences of family members. J Palliat Care. 2001;17(4): 241-247.
18.
Edvardsson T., Ahlström G.Being the next of kin of a person with a low-grade glioma. Psychooncology. 2008 ;17(6):584-591.
19.
Lobchuk MM, Degner LFPatients with cancer and next-of-kin response comparability on physical and psychological symptom well-being. Cancer Nurs. 2002;25(5):358-374.
20.
Cella DF, Tulsky D.Measuring quality of life today: methodological aspects. Oncology. 1990;4(5):29-38.
21.
Pain K., Dunn M., Andersson G., Darrah J., Kratochvil M.Quality of life: what does it mean in rehabilitation? J Rehabil . 1998; 64(2):5-11.
22.
Mellon S., Northouse LL, Weiss LKA population-based study of the quality of life of cancer survivors and their family caregivers. Cancer Nurs. 2006;29(2):120-131.
23.
Sarna L., Cooley ME, Brown JK, et al. Quality of life and health status of dyads of women with lung cancer and family members. Oncol Nurs Forum. 2006;33(6):1109-1116.
24.
Downe-Wamboldt B., Butler L., Coulter L.The relationship between meaning of illness, social support, coping strategies, and quality of life for lung cancer patients and their family members. Cancer Nurs. 2006 ;29(2):111-119.
25.
Heidegger M.Being and Time (Trans. Macquarrie & Robinson) . Oxford, UK: Blackwell Publishers Ltd; 1962 /1997.
26.
Munhall S.Heidegger and Being and Time. London, UK: Routledge; 1996.
Kvale S.Interviews an Introduction to Qualitative Research Interviewing. London, UK: SAGE;1996 .
29.
Moustakas C.Phenomenological Research Methods. London, UK: SAGE; 1994.
30.
Benzein E., Berg ACThe level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Palliat Med . 2005;19(3):234-240.
31.
Duggleby W. , Berry P.Transitions and shifting goals of care for palliative patients and their families. Clin J Oncol Nurs . 2005; 9(4):425-428.
32.
Berterö C., Vanhanen M., Appelin G.Receiving a diagnosis of inoperable lung cancer: patients’ perspectives of how it affects their life situation and quality of life. Acta Oncol. 2007;47(5): 862-869.
33.
Åstedt-Kurki P., Paunonen M., Lethi K.Family members’ experiences of their role in a hospital: a pilot study. J Adv Nurs. 1997; 25(5):908-914.
34.
Osse BH, Vernooij-Dassen MJ, Schadé E., Grol RPProblems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nurs. 2006;29(5):378-388.
35.
Benzein E., Saveman B-I.One step towards the understanding of hope: a concept analysis. Int J Nurs Stud. 1998;35(6): 322-329.
36.
Benzein E., Norberg A., Saveman B-I.The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med. 2001 ;15(2):117-126.
37.
Andreassen S. , Randers I., Näslund E., Stockeld D., Mattiasson A-C.Family members’ experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer. Eur J Cancer Care . 2005;14(5): 426-434.
38.
Milberg A., Strang P., Jakobsson M.Next of kin’ experience of powerlessness and helplessness in palliative home care. Support Care Cancer. 2004;12(2):120-128.
39.
Appelin G., Berterö C.Cancer patients’ experiences of palliative care in the home . Cancer Nurs. 2004;27(1):65-70.
